Tuesday, January 31, 2012

DSM-V Revisions for Autism Spectrum Disorders & Asperger's Need to Remember that we are the 1 in 1


Article here, news flash there, passionate debate raging everywhere!  If you have a connection to the autism / Asperger’s community, you have probably come across writings and stories in the past couple weeks related to the proposed 2013 changes to the DSM-V manual.

What is the DSM-V?  It is the 5th Diagnostic and Statistical Manual of Mental Disorders due to be published in May 2013. (On a side note, anyone know why it isn’t called the DSMMD-V? This isn’t a trick question. It just bugs me.) This big book of standards published by the American Psychiatric Association will be the go-to guide in diagnostic criteria for mental health professionals in the USA. It will also be referred to around the world.

The last time one of these manuals was published was 1994.  For those playing at home, that is eighteen years ago. Seems kind of bizarre to me that it has taken so long for a revision but then again, this isn’t the software / hardware industry we’re talking about... (How many times have I upgraded Windows?)

It was in the DSM-IV that Asperger’s Syndrome first appeared.  I personally was not familiar with AS as a diagnosis until 2008 shortly after my youngest son was diagnosed with autism at age 2 and my oldest son was diagnosed with Asperger’s at age 9.  Women and girls often present quite differently than men and boys so I didn’t put all the connections together immediately but it wasn’t too long afterwards that I realized and accepted my own place on the autism spectrum. Once I did, it really was so obvious and explained so much about many of my childhood and early adult challenges. Of course it would take quite some time after that to go through all the medical hoops and loops to get my own official Asperger’s Syndrome diagnosis. I’ll save THAT entertaining back-story for another day.

Relieved that I finally had a name and some details for what I was going through, I wrote a couple popular blogs in early 2010: Before I Knew I Was An Aspie, My Puzzle Piece Didn’t Fit and The Outing of A Girl With Asperger’s Syndrome - What Did I Do?

Although my diagnosis on the autism spectrum did not define me as a person nor did it define my sons, it was a relief to finally be able to embrace the knowledge that I was not alone, that there was a reason for many of the sensory, social and physical challenges I had been having since childhood and that there was a whole community of others out there that were experiencing similar challenges as adults, teens, children, men and women.  Better yet, there were people I could connect with online who shared strategies, challenges and showed support. They were from all ethnicities, all socio-economic backgrounds, all religions. Although autism spectrum disorder is more prevalent in males in diagnosis, there are many women out there as adults that are undiagnosed.  In fact, a lot of adults end up being diagnosed after they have children or grandchildren on the spectrum.  It wasn’t that it didn’t exist before 1994... it’s just that no-one had been successful until then in trying to define it and have it recognized in the DSM by the medical community.

So now that you know that Asperger's Syndrome was first officially recognized by the APA in their DSM-IV, here is the shocker. That Asperger’s Syndrome diagnosis is likely to go away if the DSM-V proposed changes are to take effect.  Autism spectrum sub-categories such as AS and Pervasive Developmental Disorders Not Otherwise Specified (PDD / NOS) are proposed to disappear and instead there will be one umbrella diagnosis of Autism Spectrum Disorder.  

HOWEVER, it isn’t as simple as that. In order to qualify for this diagnosis (which will presumably impact one’s ability for themselves or their children to qualify for educational, medical or other services), a narrowing of the criteria takes place. Not everyone "fits".

It has not been made clear whether those previously diagnosed will have to spend extra money and time to requalify or if they will be “grandfathered” into the new Autism Spectrum Disorder diagnosis however I am assuming that for certain services, a reclassification or rediagnosis will be requested or required by the schools and/or insurance companies.

Here is the proposed diagnostic criteria for the “new” Autism Spectrum Disorder. Please note that a lot of these criteria will be very subjective and as the disorder must have initially displayed during childhood, adults or older children going in for a diagnosis are going to have to think back and use their best judgment in filling out the accompanying questionnaires. 

Autism Spectrum Disorder
Must meet criteria A, B, C and D:

A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
1.     Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
3.     Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people

B.    Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
1.     Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
2.     Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
3.     Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
4.     Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
C.    Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
D.         Symptoms together limit and impair every
day functioning.

source:  http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#

Additionally a severity level is added:


Severity Level for ASD
Social Communication
Restricted interests & repetitive behaviors
Level 3
‘Requiring very substantial support’
Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; very limited initiation of social interactions and minimal response to social overtures from others.  
Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres.  Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly.
Level 2
‘Requiring substantial support’
Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others.
RRBs and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts.  Distress or frustration is apparent when RRB’s are interrupted; difficult to redirect from fixated interest.
Level 1
‘Requiring support’
Without supports in place, deficits in social communication cause noticeable impairments.  Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others.  May appear to have decreased interest in social interactions.
Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest.


source: http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#

What that severity level translates into in terms of service and support for the future is not for me to say but I sure would like to know for my two sons, myself and everyone out there in the autism / Asperger’s community. I’m not alone. I’m not the only one confused and concerned. For every individual in the community, there is a voice deserving to be heard.

Although the changes in diagnostic criteria have been in discussion for awhile, a January 19th article in The New York Times and a January 20th article and video segment from ABC news brought these proposed changes directly into the spotlight and fueled a fire among many in and outside the autism community. Part of what ignited the recent concern were ominous sounding titles like “New Definition of Autism Will Exclude Many, Study Says” and “Changes to the Autism Spectrum could leave some without health coverage.” These are the kind of titles that trend on Twitter, get shared on Facebook and make it into the mainstream media. Quite frankly, they’re the kinds of titles that put a fire under the rear and piss people off.

Various autism organizations responded to the articles in the media. Some sounded like they were coming out in favor of waiting to see how the changes go and others vehemently opposed, encouraging daily calls and emails to the APA.

What do I think? Where does our non-profit, Autism Empowerment stand?

Good question... Can I be frank with you?  I think at this point the whole thing stinks and will further fracture a community of already divided individuals.  If what some studies are saying is true, that the new definitions of autism will exclude many then who exactly will that benefit?  How can disenfranchising a portion of the autism community be good for promoting autism acceptance and awareness?

Right now it all looks lose-lose to me and judging by some autism forums, there is dissent all around. There are some on the severe end of the spectrum that don’t want the Asperger’s population in with their group because of fear that there won’t be enough funding for their services. There are some in the Asperger’s group that don’t want a new “label” of autistic or autism spectrum disorder for fear of stigma.  Where is the acceptance for all of us for who we are, where we are on the spectrum at this point in our lives?  Where is the compassion? Where is the logic? Why can’t we be BOTH neurologically diverse and accepting that there are many of us on the autism spectrum that want an accurate diagnosis so that our children and ourselves as adults can have services available to them if needed?

Back in my early sales and marketing days, I was taught that when presenting a new product or service to an individual or group to make sure to answer WIFFM (pronounced wiffum) or What’s In It For Me early in the presentation.  It was applied psychology.  How can my service benefit YOU? Because quite frankly... it doesn’t matter how special you think you or your product is, if a customer doesn’t see a personal benefit, they’re not likely to buy what you’re selling.

So I ask all of the professionals on the DSM-V diagnostic committee, presuming you have the best interests in mind of all of those on the autism spectrum, what is in it for me with this new diagnostic criteria? And just out of curiousity, what is in it for you?

Will my son with autism who is 5 who has made great progress through early intervention and is now in a mainstream Kindergarten with pull-out supports for social, speech and OT still qualify for the same services he has now with the new diagnosis of autism spectrum disorder? Academically he’s quite bright. Socially, he’s quite young. Sensory-wise, he is all over the map.  Some would probably call him “high-functioning” but high-functioning does not mean not having a ton of problems on the back-end. By back-end, I also mean his back-end... but that’s another story...

Will my technologically gifted but socially naive son with Asperger’s who is 12 but is finding middle school challenging find his SCIP (Social Communication Integration Program) program and the aid he’s been receiving with organization and life skills at school to suddenly disappear?

Will I, a 44 year old woman with Asperger’s with a combination of sensory and social issues now fall into the abyss?  Will I have to pay another exorbitant amount of money to be reassessed? Is it worth it? I mean after all... who knows when the next revision might change things all again.

Truth be told, except for the school services, we’ve pretty much had to pay out of pocket for most of the other services we’ve received. Those health deductibles are pretty high for us self-employed types... which by the way, tends to fit many Aspies who are employed.

In my immediate family, we are just three on the spectrum affected by these new DSM-V changes.  You’ve probably read the CDC statistic that approximately 1 in 110 children in the USA have some sort of Autism Spectrum Disorder.  If we apply that statistic to the United States population as a whole, there are likely millions in the United States with an autism spectrum disorder. Yeah... that’s a lot.

Earlier in this blog, I asked, what do I personally think about the proposed changes? Where does our non-profit, Autism Empowerment stand?

Here is my answer...

Whatever the powers that be on the APA diagnostic committee decide regarding the final revisions to the definition and sub-categories of “Autism Spectrum Disorder” will not change the fact that...

1) When I wake up the day after their decision, my sons and I will still be traveling the road less traveled on the autism spectrum. 

2) We’ll still have challenges related to our neurological / medical conditions and those challenges will not disappear because of a diagnostic definition change. We'll still need strategies to assist and want people to support and understand us. Perhaps what will disappear is money from our wallets as we jump through hoops and loops again to get rediagnosed / reclassified. The APA isn't volunteering to pay for that, are they?

3) Although some would prefer looking at us in the autism community as statistics or an epidemic, we are individuals and deserve to be treated by the medical community, autism community and world community as such. Our medical services should be individualized. We should not be disenfranchised.

We are not 1 in 110, 1 in 70, 1 in 150 or 1 in whatever number some incredibly expensive research study decides is next.

4) We are the 1 in 1. Treat us based on THAT ratio. For you see, no matter what the “prevalence rate” is, in our lives for those of us who are on the spectrum, autism is 1:1. We live with it every day.

Autism poses lifelong challenges. Individuals with autism deserve the opportunity for lifelong support.

I’ll be honest, the new proposed definitions frighten me and sadden me. On the positive side, they reinforce in my mind that I made the right decision in getting involved co-founding Autism Empowerment last year. Autism Empowerment is a 501(c)(3) public charity that aims to provide nationwide and worldwide support to individuals and families affected by autism spectrum disorders and related co-conditions. We serve all ages, all stages of life.

The four foundational pillars of our organization are Accept, Enrich, Inspire, Empower.  We are dedicated to creating programs and services that provide help in the here and now... and when we need it most.  

Accept - We strongly promote the unconditional acceptance of those on the autism spectrum and with related disorders. This includes self-acceptance and social acceptance. By accepting each spectrum traveler for who they are, where they are in the present moment, we are promoting both autism acceptance and autism awareness.

Enrich - Our goal is to provide educational resources, programs and tools to improve and enhance life skills for those on the autism spectrum as well as their families, caregivers, therapists and teachers. We aspire to make life more meaningful and rewarding.  

Inspire - We dedicate ourselves to be a positive and uplifting organization that encourages. promotes and celebrates success in all individuals. We believe each person on the autism spectrum has the opportunity to make a positive difference in this world.

Empower - We strive to empower those on the autism spectrum to achieve their highest quality of life academically, emotionally, financially, socially and spiritually.

We are about bringing people together, respecting both our individual talents and the wide range of the autism spectrum and providing support, encouragement and enrichment.  We have a vision and although we’re in start-up stages, we will make our vision happen.  If you’re interested in joining us, we could use your support.

I didn't mean for that last part to sound like a "plug" but Autism Empowerment truly is my passion and calling and I hope for the organization's name to be known so that we may develop programs to help all those who desire it. 

Thank you for staying with me while I shared some of my thoughts about the recent proposed DSM-V changes. I've been wanting to write about this for over a week but it take me awhile to compose my thoughts and transfer them from my head to my fingers. I truly don’t want to take a "wait and see" what happens attitude as some propose. I’m not afraid for my opinion to be known whether it be seen as popular or unpopular.

I personally think being proactive and advocating with respect will have a better chance of positively affecting you and your loved ones than sitting back, waiting for something to happen and then being reactive.

Remember, the only statistic that will never change in this debate is that when a loved one is on the spectrum he/she is the 1 in 1. If you are on the spectrum, YOU are the ONE in ONE. You deserve to be treated with dignity and respect, with kindness and accepting, with support and encouragement.  Advocate for yourself.  Advocate for your children.  Advocate for those on the spectrum who have trouble sharing their voices. Do it positively. Do it passionately. Do it professionally.

If you’d like to contact the American Psychiatric Association (APA) to let them know your opinion on the proposed diagnostic changes, you can do so at dsm5@psych.org or apa@psych.org. You can also call at (703) 907-7300.  

Thank you for taking the time to read this! Please feel free to share with your social networks, the media, colleagues... and onward! Let your voices be heard! We all deserve the opportunity to be accepted as we are and to let our lights shine. We ARE the 1 in 1. 

Karen Krejcha, Mom to 2 on the spectrum, Aspie 
and Executive Director
Autism Empowerment
http://www.autismempowerment.org

Wednesday, January 18, 2012

Autism Empowerment Updates - Why Autism Empowerment, Why Now?

Hi Aspierations Friends,
Tonight I wanted to share with you a blog that I wrote for Autism Empowerment. Although I don't plan to regularly cross-post Autism Empowerment blogs at Aspierations - Come As You Are Let Your Light Shine, I thought this was an important one.
I've been having a bit of a challenge lately being able to translate detailed imagery and visions in my head into words that I think will make sense to others.  This isn't new to me... 
Tonight I hope I was able to convey a little of what I am thinking about in relations to our new non-profit, Autism Empowerment. I am so excited about the progress we are making but I sure wish it would be faster.  I wish we had the money to implement our programs now. I am an idea person and I need an execution master.  Actually, I could use a team of execution masters, especially if they had a forest of money trees ripe for the picking!
HERE WAS MY BLOG from Autism Empowerment copied and pasted in entirety. Your comments are welcome!
Let me just jump right in here and say that I am so excited about what is happening with Autism Empowerment in 2012. We just participated in our first health fair, we joined the Greater Vancouver Chamber of Commerce and we're a proud member of the Nonprofit Network of Southwest Washington. We recently submitted a grant inquiry for our Autism Empowerment Support Network and we're interviewing next week in consideration for a grant for our Autism Empowerment Access to the Arts program.
Although I've been involved with and have founded start-ups before, this is my first start-up experience with a nonprofit.  It has been an amazing process so far. Admittedly there is a learning curve especially when it comes to legalities and paperwork but I'm used to taking the winding road less traveled.  Bring it on!
Why Autism Empowerment?  Why now?  Does the autism community need another 501(c)(3) nonprofit? Why, yes it does! As you get to know me and our organization's vision better over the upcoming months, I hope you'll begin to get why.  I don't expect it to be overnight, although frankly I wish I had a magic switch that could make that so. Serving the autism, Asperger's and ASD community with services people can jump in and use immediately is what I feel I've been called to do.  It's my passion.  It's something I want to do in the present and in the future. I don't say those words lightly.  I walk my talk.
Autism is a huge part of my personal life although I don't let it define me. I have two sons on the autism spectrum. My oldest son is 12 and has been diagnosed with Asperger's. My youngest son is 5 and was diagnosed with autism shortly after he turned 2 and had gone through a developmental regression. About a year after my sons were diagnosed in 2008, I came to the realization (or should I say, I came to acceptance) of my own place on the autism spectrum. After a much more lengthy process than necessary navigating the hoops, loops and alphabet soups of the medical system, I was also officially diagnosed with Asperger's Syndrome. Additionally, the three of us also have a wide range of sensory processing issues (SPD) and co-conditions. I won't go into that here but suffice it to say that we're building some pretty thick medical and educational files.
My husband John is the only one of the four in our immediate family not on the autism spectrum. It makes for an interesting dynamic and explains why for the first 16 or so years of our marriage, he thought I might have come down to earth from another planet.  (A nice planet, mind you... but a different one nonetheless.  Now I'm not sure if he came up with the idea himself or if I implanted... err.. planted it into his head but the way I feel sometimes in trying to communicate, real life and science fiction don't always seem that far apart.)
John had his own challenges growing up with undiagnosed dyslexia and knows what a relief it can be to finally put a name to something he had been puzzling about.  John is also incredibly passionate and driven to build Autism Empowerment into an accepting, enriching, inspiring and empowering organization for those on the autism spectrum and the families and providers that support them.  I couldn't have a better partner in start-up and in marriage. 
Right now we're both volunteering with Autism Empowerment while we run an online retail business at home from the side. We try to put in as many hours as we can when not with the kids, working or partaking in other life routines. It is our goal at some point during this year (sooner rather than later) to be able to transition to Autism Empowerment full-time.
Of course we haven't yet found a way for the bills to pay themselves so for now, we're doing both. As such, the growth at Autism Empowerment hasn't come as quickly since inception (June 2011) as I had hoped but I am a patient gal and truly believe that this is our year to let our light shine and connect with individuals, families, partners and visionaries who share our common interests. Patience, perseverance and passion... we have it and we hope our supporters will too.
There are other worthy organizations that are dedicated to medical research and providing services for those in the autism community. We're not a medical research non-profit so one might ask, what do you have to offer and why does the world need Autism Empowerment? Why now?
All of our programs are being developed based on the four foundational pillars of our organization, AcceptEnrichInspire and Empower.  Call it a motto, call it a philosophy, call it what you like but we are working hard to make sure these four concepts tied together will help define who we are and what we believe.  Because these concepts are so important to us and not just buzz words that sound good, I will be writing about them in depth separately.  I have a little blurb about each one on the Autism Empowerment homepage and in our downloadable community letter in case you want to check those out.
Each concept truly deserves its own blog but knowing my writing style, it's more likely to be a dissertation.  I don't suppose anyone has a flash drive they can use to download what's in my head into their brain? 
I'd like you to think about other non-profit organizations that you believe in and support. What sets them apart? Is it the cause? The mission? The leadership? The programs? The research that they do? The reputation? The style? The advertising and marketing? What makes you support them versus another nonprofit that helps the same cause?  
I can't speak for other organizations nor would I try to. We are not looking to compete with other autism support organizations. In fact we hope to have the opportunity to partner with those who share a similar vision and passion.
We believe in sharing our programs and support services with the world and plan to create programs that can and will be duplicated in order to reach the greatest number of people possible. Because we believe in giving back to the community we live in, many of our  programs will have pilot runs in the Vancouver, WA / Portland, OR metro area.  Other programs such as an upcoming radio show, online support network and educational webinars will be open to the world online.
We don't want to hide information, we want to freely share it with other individuals & families who are walking similar paths. We don't want to wait years to provide those in the autism community with help and strategies that work.  As parents of kids on the spectrum and as an adult on the spectrum myself, we know that when we have a challenge at home or out in the world, we seek strategies that we can put in place to help us in the present.  
We don't need uneducated critical judgment.  We need acceptance and compassion.  We don't need endless hoop jumping and having to run up great debt to try and get services. Although we appreciate research and participate in it ourselves from time to time, we want tools and resources we can turn to today while other strategies are being developed.  We want to make a difference today and we believe that Autism Empowerment can and will do just that. We live in the present.  Each day is a gift and we want to make the most of it. We like being inspired and motivated when we're feeling down and we strive to provide stories of inspiration to others as well.  There are days we can all use a boost and we believe each one of us has a special story to offer. We may have challenges but it is also healthy to celebrate our successes.
I wish I could take you on a journey inside my head because I know unequivocally that if I could share with you my detailed vision for Autism Empowerment and have the world see it the way I see it, so many would come on board with us and know that what we plan on developing is so worth the investment.  
That being said, as a woman with Asperger's, it's difficult to translate the big picture vision and full-length feature movies going on inside my head into succinct words that make sense for others who think differently from me to understand. As my oldest son who is a huge tech wiz would say, "you need a special interface and an updated processor with more memory and a better graphics card would probably help too..."
So true... and I wouldn't be surprised if he were the one to one day design it for me!
I will continue to work on my interface. Truth be disclosed, I am an idea person. If you're an execution master and interface genius, we could bring about positive change to the 1 in 1 affected by autism spectrum disorders.  Oh yes, I know the statistic quoted by the CDC is currently about 1 in 110 but if you're the person that is being impacted, you are the 1 in 1... and doesn't the 1 in 1 deserve 100% effort? I am the 1 in 1.  Are you?
In future blogs, I will be sharing my visions for the programs we are developing and plan to create.  We aim to develop and provide services and programs that can be utilized in the present for those in all ages and stages of life and in all areas of the autism spectrum.
I hope you'll consider supporting us!  Thank you for taking the time to read the Autism Empowerment blog today. I welcome your feedback and comments and appreciate you forwarding this along to your social network. If what I have written as touched you and you'd like to be a part of Autism Empowerment or have ideas that could help us take our programs to the next level, please drop me a line. If you know of anyone who might be interested in helping us invest in our vision and make the move to Autism Empowerment full-time, we'd appreciate the assistance. I'll admit that asking for money from individuals is a skill I was much better at when I was a little kid selling Girl Scout Thin Mint cookies but I'll be humble here and say that Autism Empowerment would greatly appreciate your help or the help of those you know who would believe in what we do. In giving, we receive...
Before I go, I wanted to say one more thing about our four foundational pillars: 
AcceptEnrichInspire and Empower
When you come to a place where you are at peace and accept yourself for who you are, where you are, you have a stronger ability to let your light shine and inspire others.  When you feel self-acceptance and social acceptance, you are often more willing to further enrich your life, thus providing you with new tools and strategies for empowerment. 
AcceptEnrichInspire and Empower tie together.  It's not just a "motto"... it's my way of life and it's our organization's way of life.
Thank you! 
Karen Krejcha, Executive Director

Saturday, January 14, 2012

Aspie at a Health Fair - First time presenting for Autism Empowerment

Do you mind if I share some exciting news with you?

Well, even if you do, I'm going to share it anyway!



Today my husband John and I were exhibitors at the Firstenburg Annual Health & Wellness Fair in Vancouver, Washington. We represented Autism Empowerment, the 501(c)(3) nonprofit we founded last year.  This was the first time that as an organization, we participated in a health fair and provided information and outreach to the public about autism spectrum disorders and often related co-conditions such as Sensory Processing Disorder, OCD and ADHD. We also introduced the public to our organization and shared about the programs and services we are developing and working to fund.  We promoted the four foundational pillars of our organization: Accept, Enrich, Inspire and Empower.

It was invigorating, exciting, empowering, insightful and reinforced that all the work we've put in over the past few months preparing ourselves for events like these were well worth it.  Last night John and I were burning the midnight oil preparing.

It was also scary.  To be honest, I wasn't sure how well I would do in a small space with lots of unfamiliar people, conflicting noises from different booths and trying to participate in multiple conversations at the same time.  Being on the autism spectrum myself with Asperger Syndrome, I have challenges in social situations. I can do a pretty decent job speaking in front of others when I have a script in my head to use but sudden unexpected questions where I feel unprepared can really rattle me.

I had to do it though.  This is such a passion for me. It's hard to explain.  I have a real desire to let people in this world know that those on the autism spectrum are amazing people that deserve acceptance and respect.  They each have an inner voice and something special to contribute to the world.  They also have challenges that can often be assisted with strategies tailored to them.

Today I saw firsthand how accepting and how clueless the general public could be.  Some could even be quite rude.  I am reminded of a woman probably in her 60's who was looking at our table. I smiled and greeted her and introduced our non-profit and she replied something along the lines of "oh, thank GOODNESS I don't have to deal with people like THAT. Autistic people scare me. I leave whenever I see one of THEM come into the room."

Lady, you scared me.  I may be an Aspie, but you're assinine...



For a millisecond, I contemplated sharing with her that I was one of "those" people and perhaps she should be leaving the health fair pronto but it occurred to me that what she needed was information, education and probably a few prayers too so I smiled and was kind and gave her as positive an impression as I could. Maybe I made a difference, maybe not. There was no way I was not going to positively advocate for my fellow brothers and sisters in the autism community.

Although there were others that passed by our table that made some comments which I'm glad my kids weren't around to hear, I made it my goal to be a positive advocate for those on the autism spectrum who could speak and for those who couldn't.  Granted, I am just one voice among many but we all deserve to be accepted and treated with respect and kindness.



I disclosed my Asperger's to many today and I also talked about being the mom to two sons on the spectrum.  Wearing the mom hat, I could talk with and relate to other parents who were experiencing challenges and questions about their kiddos but weren't sure what the next step was. Wearing the Aspie hat, it opened the door for conversations with a few adults who were interested in possibly getting diagnosed or finding answers and resources for challenges they were facing.

I am not ashamed of who I am. I realize that for many that there is a stigma attached to autism but I'd like to be a part of changing that impression.  There were a few that upon my disclosure looked freaked out that they might have said something that offended me but I'm a big girl and would rather have these conversations face-to-face where I can respond than behind my back where I can't.

The comments that always amuse, confuse and sadden me simultaneously are along the lines of...  "Really? But you seem so normal..." or "well, if you can communicate like this, it really can't be that bad for you." I try to make the assumption that most people are well-meaning when they say stuff like that but seriously... how do you respond to comments like these?  I "seem" so normal.. but...???  Minimalizing my challenges after just a few moments spent with me?

Well to be honest, I often thought I was from another planet growing up or at least another plane of existence, so the thought that I might not be considered "normal" (whatever THAT is) doesn't really phase me anymore. Although I suppose these comments are intended by some as a compliment, they really come off as back-handed insults so people, please be mindful of what you're saying!

That being said, I've put my foot in my mouth before more times than I can count so I try and give people the benefit of the doubt until they prove that wrong.  If I wasted my energy being adversarial with everyone that said something negative or rude, I'd live a very unhappy life.  In my opinion, it's much better to show a positive example but still an honest one.  Just because I may be able to write or articulate myself, doesn't mean it's a cake walk. It is very hard work and will always be a work in progress.



There is something else interesting about the health fair today that I wanted to share.  Our table was located next to a father and daughter who were exhibiting something completely unrelated to autism (I won't disclose it here out of respect for their privacy) but in getting to know our table neighbors, they disclosed to us that both of them were also on the autism spectrum, the father with Asperger's and the daughter with autistic disorder or more "classic" autism.  At the table on the other side of us, there was a mother who struck up a conversation with us because her school-age son has Asperger's.

What are the odds of Autism Empowerment being placed between these two families?  I don't know whether you believe in God but I do and I believe we were placed there for a reason and an opportunity to connect.

Today was an amazing day.  We made connections with other service providers in the community that we're going to hopefully partner with in upcoming events.  We gained information from some local health care providers that we're going to add as resources on the Autism Empowerment website.  We handed out a number of packets, added some to our new mailing list and had some heartfelt conversations with individuals who wanted to know more about autism spectrum disorders.

I might have had my heart racing and I might have looked to some like a deer caught in the headlights in trying to respond to certain questions but in every instance, I did my very best.  Thank goodness my husband John was by my side.  As the only "neurotypical" in the family, we sometimes joke at home that he's the odd man out.  Well today, every time that I stumbled or paused to process information and gather my thoughts, John was there.  Sometimes all it took was a reassuring hand on my shoulder, a little extra grounding sensory input, a safe zone... He is an incredible advocate for the autism community and I wish all fathers of children on the spectrum were as interested and involved as he is.

I am also thankful to my parents who without their unconditional support and love, this would not have been possible. They know my passion and fully support our vision for providing positive accepting, educational and inspirational resources and support to the autism community right now. So many times we hear of studies that are researching this or that and although we have participated in some of these studies ourselves and know they may very well have a benefit down the road, what we have heard from so many families is that people are looking for resources and support that can help them right now.  They are looking for emotional, strategic, financial, physical and spiritual support.  They are looking for the best way to help their loved one with autism reach his or her highest potential. That is what we aim to provide... and we are excited about developing an Autism Empowerment Support Network built on excellence, built on the experience of individuals and families living with ASDs and built with passion, acceptance, love, a thirst for knowledge and an unstoppable desire to continually seek resources to better one's life.

Now that we have our first health fair under our belt, we are excited and looking forward to the next.  After four hours of conversation with strangers, I needed decompression time when I got home.  Admittedly, I went straight to the computer and started researching websites of providers we had met but then it occurred to me that I was physically exhausted and needed time to be able to come down and process everything that had just happened.  After a rare and well-needed nap, I came back, did some work for our business that pays the bills (Count Your Beans), posted a few blurbs here and there on Facebook and came to Asperiations, Come As You Are, Let Your Light Shine to blog.



I have decided that it is important to share more of my personal journey along the spectrum... the successes, the challenges, the trials and tribulations, the meltdowns, the accomplishments, the humor, the advocacy... it all needs to be out there to give a more complete picture of life on the spectrum.

Should you be at an event in the future and come across Autism Empowerment, please feel free to come over, say hi and share your story.  In fact, you can say hi now at our Facebook page.  It's relatively new and growing but we look forward to getting the word out to those in the autism community that it is a positive place to congregate for support, inspiration, acceptance and enrichment.  As mentioned above, the four foundational pillars of Autism Empowerment are AcceptEnrichInspire and Empower and that is what we intend to provide with each program and service we develop.... not just today but tomorrow and every day in the future. People on the autism spectrum need to have a venue to let their light shine. Quite frankly, everyone needs that venue.  If you're experienced in fund-raising, work for a company that supports causes such as ours, have an involvement in the media and/or are interested in our mission, we could use your help.

Won't you join us?

Here is my Aspierations Facebook page:  http://www.facebook.com/pages/Aspierations-Come-As-You-Are-Let-Your-Light-Shine/243000695711263

Here is the Autism Empowerment Facebook page: - http://www.facebook.com/autismempowerment

Here is the Autism and Scouting Facebook page (a program of Autism Empowerment): http://www.facebook.com/autismandscouting

Here is our Autism Empowerment website:
http://www.autismempowerment.org



Here are PDFs of a few of the sheets we handed out today:



Thank you so much for reading my blog today!  I welcome your feedback and support!  Starting a non-profit 501(c)(3) has been quite an adventure thus far.  I have learned there are areas where I shine (coming up with ideas for programs, internet research, exuberance and passion, creative and organizational writing,sending professional emails....) and there are areas where I have a lot of room to grow (asking for money, securing corporate partnerships, time-management, overcoming initial writer's block when taking on tasks, initiating phone calls, reading social cues in person and not talking too fast or too much when I'm nervous.)

Please feel free to share this blog as I look forward to sharing my journey, the journey of my family and the growth of Autism Empowerment with you!

Best wishes in your own journey!
Letting my Light Shine today and always,
Karen Krejcha

Monday, January 2, 2012

High Aspierations for the New Year & a plug for Autism Empowerment

Happy New Year, Aspierations Friends!



I am so excited to be in 2012. Not that 2011 was bad. In fact, a lot of meaningful accomplishments happened in my life during 2011.

It was probably one of the busiest years of my life and I've had many.  It was definitely one of the most spiritual.  But more on that later...

For those who have followed my blogging for any length of time, you may know that my husband John and I own an online retail business called Count Your Beans.  We sell dolls and bears online through our website, eBay and Amazon. The period from right before Thanksgiving until a couple days before Christmas is just crazy.  Shoppers on steroids... and it's not that they're buying so much more, it is that there are so many customer service questions and everything includes a real big sense of urgency. Instead of the regular collectors we have buying from us throughout the year, we have a lot of people coming to us for the first time looking for gifts for their loved ones.  We've been doing this over 12 years and we can always guarantee the last minute "gotta have it overnight Express" orders from men.  The 3rd week of December tends to have more males shopping with us than any other week in the year!  Love you, guys!

I'll admit, I'm ELATED to be out of the Christmas rush. The holidays provide a lot of sensory overload for me and my boys.  Having the kids off school for two weeks for "Winter Break" was anything but a break for Mom and Dad.  Love the kids... don't love going way off-routine during one of our busiest weeks of the year.  Arrrgh....  I know of two parents in this household who will be celebrating when the boys go back to school tomorrow.  Our hearts go out to the teachers!

One thing I wish I had more time to do during "Winter Break" is actually take more time to relax and enjoy the holidays. We enjoyed drives and walks to see the Christmas lights, spent some time playing family games and tried to keep the boys entertained while dozens of to-do items swirled around in our heads but it certainly wasn't rest and relaxation.

Do you have resolutions for the New Year?  I am so excited about Autism Empowerment, the 501(c)(3) public charity that John and I co-founded over the summer. We haven't had as much time to work on it as we hoped but we are making it a priority for 2012.  In fact, it is so much of a priority that by the end of the year, John and I hope to be doing Count Your Beans very part-time and Autism Empowerment very full-time.  We'll still take care of our customers and will still offer product for pre-order and sale, however we are putting our faith and focus into the foundation and funding of programs for Autism Empowerment.

I look forward to sharing some of those projects with you very soon.  We have an interview for grant funding for one of our projects later this month.  I'll share that shortly.

I am so jazzed to be blogging again. I missed writing to you very much!  I am not making many New Year's Resolutions but one is to schedule time to blog at Aspierations - Come As You Are, Let Your Light Shine at least twice a week.  I will also be blogging for Autism Empowerment and will be writing features and articles for programs we are developing.

Have you seen our Autism Empowerment website yet?  Please feel free to check us out:
http://www.autismempowerment.org 


I love our new logo!


We have a very special project we are currently working on and that has come together in just the last few weeks.  John is the Unit Commissioner and I am the Committee Chair for the first ever Sensory Friendly Cub Scout Pack in Vancouver, Washington. We have an excellent Cubmaster, Deanna Pehrson and are all working hard to put together a terrific team!

If you know of boys in the area in the 1st - 5th grades with sensory issues, autism, Asperger's, SPD, PDD / NOS, ADD, ADHD, cerebral palsy, Down's Syndrome or any other special need, Cub Scout Pack 2 is dedicated to being an inclusive accepting, enriching, inspiring and empowering place where Scouts can Do Their Best!

Although Autism Empowerment is not affiliated with the Boy Scouts of America, John has been a volunteer for many years and I've helped out here and there as well. As part of Autism Empowerment's "Autism and Scouting" program, we have provided some seed money to the Pack and we are also volunteering our time and will be providing youth and adults with sensory training and support resources.  The Pack also plans to have a support group for adults.

Although Ryan is too young to join now, we are very excited to have our youngest son join this Pack as a Tiger Scout after he completes Kindergarten this school year.

Here is the Cub Scout Pack 2 website and Facebook page for more details.  Our son Justin who has achieved the rank of Star in Boy Scouts designed it for us.  He was thrilled to use his special interest for good and we think he did a VERY good job, especially considering he is 12!


https://sites.google.com/site/pack2vancouver/home - Cub Scout Pack 2 Website

https://www.facebook.com/pages/Cub-Scout-Pack-2/203883336362366 - Cub Scout Pack 2 Facebook



Here is a blog that I recently did at Autism Empowerment looking for volunteers:
http://www.autismempowerment.org/blog/entry/2655093/volunteers-adult-cub-scouting-mentors-needed-in-vancouver-wa

If you'd like to hear the story about how this Sensory Friendly Pack has come about in a 3 week period (one of our busiest personal times of the year), check out John Krejcha's Autism and Scouting blog, "Three Weeks in December - The formation of a Sensory Friendly Pack"

http://www.autismandscouting.blogspot.com/2012/01/three-weeks-in-december-formation-of.html

Okay, then!

Before I end my blogging for the night, I wanted to share with you that I look forward to sharing my personal experiences as a mom on the autism spectrum with two sons traveling the journey.  These past few months I haven't been blogging much but I have been storing up content and I believe I have gone through a lot of growth spiritually and emotionally.  I am so passionate about sharing my vision for Autism Empowerment with you.  I hope you'll enjoy the journey with me!



Happy New Year!
Karen